Lynne's Sjogrens Syndrome - Stories- Paul's Sjogrens Memorial Page

It is very difficult to write a Memorial but this one was especially hard because Paul passed away at such a young age. Unfortunately, I never had the pleasure of meeting Paul in person but I felt I knew him from being friendly with his mom, Lori.

Lori and I met through my website. A friend of Lori's was searching for information about Sjogren's when Paul was diagnosed and came across my website. She told Lori about it and Lori emailed me. The strange thing is that Lori and I have the same last name though not related and we only live about 20 minutes away from each other. Over the years, we have kept in touch regarding how Paul was doing with the Sjogren's and have even met numerous times for lunch, shopping etc... I never met Paul because he was busy being a teenager when he was well and resting when he was sick. Paul's story was posted on my website for years which I will post here. Lori has also shared what Paul went through dealing with Leukemia.

It is my hope that this Memorial for Paul will somehow comfort his family. I can't imagine a greater loss than losing your child. My thoughts and prayers are with all of you.

One morning in May, when he was only six years old, Paul woke up with the right side of his face swollen. We went to the doctor's office that very morning. His doctor said he had the MUMPS and was so excited to see a child with the mumps that he called in the other Pediatricians to look at Paul's swollen face. He gave us an antibiotic and sent us home.

When I got home, I wondered if Paul was vaccinated for mumps and called his doctor. He said yes, but sometimes the vaccination doesn't work and he would re-vaccinate him. The following May, almost to the year, Paul had the MUMPS again. By this point I wasn't buying the story, but the doctor insisted that it was most likely the MUMPS. The antibiotic seemed to work and within a few days Paul was fine again. You guessed it ...one year later he was all swollen again. I told the doctor, don't even tell me the mumps theory. He agreed and then we thought maybe because it came the same time every year that it was allergy related. He also mentioned the possibility of "stones."

He sent us away with Paul in excruciating pain, telling us to find an ENT. Of course, it was a Wednesday and no one would take us for several days. I ended up taking him to the ENT clinic at RI hospital. The intern said it was stones and gave Paul an antibiotic that was so strong the poor kid was sick to his stomach for days. These flare ups started occurring more than once a year and I finally found a good ENT. Paul had some tests taken....one was an facial x-ray that required inserting dye into his cheeks to take the photo. When the ENT received the results he recommended Paul see a Rheumatologist. By this point, Paul was having flare ups at least once a month. We found Dr. Bloom only because a dear friend of mine has a lot of influence at Hasbro Children's Hospital and Paul got an appointment that very day!! I don't want to sound bitter, but if I didn't know this person I believe Paul and I would still be out in the jungle of looking for Mister Good Doctor.

Dr. Bloom took very good care of Paul. He gave him numerous tests on every disease possible. Then Paul had to go for a lip biopsy. The biopsy showed that it is Sjogren's but they believe it will not travel to other parts of his body. He takes medication every day and also has pills available in case of a flare up. He is taking Hydroxychlor 200 mg. This is the first May in six years he has not been sick. That is my story on Paul. I thank God we found a good doctor to take time with Paul and to help him be a kid again.

Please mothers, don't wait too many years to find out what is making your child get the MUMPS. Take your child to a pediatric ENT or Rheumatologist if you think he or she has these symptoms.

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For several years Paulie felt fine. He was on low dose steroids and that kept the Sjogren's at bay. He grew into a healthy teenager. Doing his best at driving his Dad and I nuts. He loved being with his friends. He loved going off roading and torturing his sister. He also loved his German Shepherd, Hiedi. He and she traveled many miles together on foot or in his golf cart.

I was working back then, and every Friday night when I got home, he'd hit me up for money and be on his merry way. I always had company on those nights and the girls loved to watch us tease each other. One Friday night in late August, after a long summer of speeding tickets, and fender benders, Paul said he didn't feel well. I remember teasing him that he must be sick, if he's staying home on a Friday.

The following Sunday morning he came in my room asking for money. He was going to Connecticut for an Auto Show. He was waiting all summer to go. Less than 2 hours later he called me asking to be picked up. He didn't feel well. When I got there, I asked if he wanted to go to the ER but he just wanted to sleep in his bed with his dog. I let him sleep. On Monday he had traffic court (I told you he was a normal kid). His Dad said he was vomiting the whole time and he felt so bad he wasn't even mad about paying the $300.00 fine.

Paul had a doctors appointment that afternoon which he asked me to cancel. It was for his Chiropractor. When I called the Doc, he said he and his daughter had that "bug" all weekend. Since Paul was there on Friday afternoon I assumed that was the problem and felt rather relieved.

When my son wasn't feeling better by Wednesday, his Dad took him to our doctor and insisted on blood work. By the time his Dad got home, there was a message to take him to Hasbro Children's Hospital.

On September 2, 2005, two days after being admitted to the hospital, Paul was diagnosed with "ALL" a form of Leukemia. Paul remained in the hospital for nearly 4 weeks. He received extra aggressive Chemo. He lost 50 pounds and was violently ill.

I'll never forget the doctor telling me that if he had to tell a parent their child had cancer, this was the highest cure rated cancer someone could get. Paul's chances of recovery were good.

Good except if he had one Chromosome off. Those chances were one in ten thousand. By mid November we got the news. Paul had the bad Chromosome. He needed a bone marrow transplant. Just before Christmas, we found out that no-one in the family was a match. Paul went back to an even stronger Chemo Therapy. By the next fall he was in remission. He still received chemo every 2 weeks in the hospital for 5 days, but things were looking good.

Paul relapsed on March 19, 2007. We went to Boston to find out more about a bone marrow transplant. We went on a Friday in March. That day Paul was so sick. When we got home, we thought the trip drained him. The next morning I called 911. His fever was 105!!! Paul had a blood infection. He never left the hospital after that.